Monday, October 23, 2017

Mackie is seven and loves Halloween. Mackie is our little guy who is medically complex and is adopted from the foster care system in our state. Halloween is his favorite holiday of the year just like his big brother Ian. Last year we made the trek to Universal Studios for the Halloween Horror Nights for his big brother. When Mackie who has Fetal Alcohol Syndrome, Autism and has neurological damage that affects his motor planning systems was 4, during the day he was silent, but "fixated" on "Charlie Brown and the Great Pumpkin". Over and over and over again he watched the movie on the TV, on his iPad sitting beside his Snoopy Build A Bear months before Halloween arrived. He could get his point across even without his speech and would not give up until we put on his favorite movie.

One night in the middle of the night we heard him talking at his usual 3:00 am wake time! What Mackie was talking? Listening closely I could not hear what he was saying. I knew he was saying words, but ever so quietly. The next night I came up with a brainstorm and placed a tape recorder in his crib and replaying the tape to my shock discovered that he was "reciting" the entire script from Charlie Brown and the Great Pumpkin. The speech that left at 21 months was there and he was not just capable of simple words part of the day, but he could speak in complex sentences. I am not too sure, but I don't think I could memorize the entire script for an entire movie, how about you? Mac could.

Like every kid, we would go "Trick or Treating" Mackie would silently sit in his wheelchair and be like every other kid. A trip to the fire station for our yearly picture which would arrive on this Mom's email the day after. The yearly pictures are a highlight of his scrapbook documenting his growth and looking back just how far he has come.

Mackie's Obsession

The Great Pumpkin was his 4 year old obsession and when were put him to bed after visiting a few homes "Trick or Treating" he was inconsolable. Mackie is quiet, he is a happy little guy. Something was terribly off. Rocking and putting on his favorite movie, snuggling his blanket, tears filling his eyes, he spoke up. "I need to wait for the Great Pumpkin". A sentence! He was sobbing.
Thank heavens for Motrin and his sleeping meds, he finally dozed off. I ran on an mission to our 24 hour Walmart and came up with a plan to have the Great Pumpkin arrive and trade his bucket of candy he would not eat leave.

Dear Great Pumpkin

The following morning Mackie and I made a trip to the backyard and in the pile of weeds in my neglected garden a orange and black package awaited for Mackie.
The Great Pumpkin came and Mackie's tradition was started and it solved our Halloween dilemma. Mackie has challenges with oral motor control, he has food allergies and intolerances that make eating candy something he cannot do. We have to look to see the ingredients are "Mackie Approved". Dye free, gluten-free, dairy-free, soy-free, peanut-free. The Great Pumpkin comes every year and his candy bucket is exchanged for a new wished for toy.

We are veteran parents of dealing with children with food challenges. My children grew up in the l980s and l990s with celiac disease at the time when no one knew about this unheard of disorder. The kids looked forward to the GREAT CANDY Swap they had with their friends. I had to be the monitor as the older ones would take advantage of the smaller kids to make sure it was fair. But Dad always ended up with a bucket of Babe Ruth, Kit Kats and Butterfinger candy bars as no one wanted them. But the GREAT CANDY SWAP helped my children trade off the offending candy to their friends and they got the ones they could safely eat. I was a veteran of reading the fine print on the tiny pieces of candy and had no internet to help me!

I am so very thankful for food labeling laws and awareness. Facebook has become a lifeline for Parents with Special Needs. I share our day to day adventures with Mackie on my Facebook wall and last year I shared about taking him "Trick or Treating" downtown on the courthouse square. He had a blast, he got his candy and we put it up. But he could not have anything in his bucket. But the Great Pumpkin would solve that on Halloween night. But he participated. I thought nothing of it.

I received a message from the shop owner who felt bad for Mackie. Karri the owner of "Cruisin Kids" has a niece who has challenges. She knows about inclusion. September 21 I received a Facebook message with a flyer about the 2017 Sweets and Treats event and the businesses will have allergy friendly alternatives. I stopped by to thank Karri asked what I could do to help. She said we needed to ask for the treats and she wished we had something to identify the kids who could not have treats.

Thank you Target Dubuque, Iowa for the Buckets

I walked into Target and found in the Dollar spot 6 Teal Pumpkin trick or treat buckets. A helpful Dubuque Team member helped search the system for when the next buckets will arrive and I stopped by to pick up all the Teal in the box that was just off the truck. A trip to Target in Madison after a medical appointment found another 9. 25 Teal buckets and a bag of non-food treats would be delivered to Cruisin Kids before the big day.

There are plenty of toys for treats at Target

Have you seen the Teal Trick or Treat Pumpkins while shopping for candy in the Halloween aisles. Learn about the Teal Pumpkin Project

This year at Halloween Mackie would be included. He could have Treats and this year he can use his new speech device to say "Trick or Treat", "Happy Halloween", "Thank you for the treats", ask the other kids "What is your costume", and say "I am Snoopy." His school speech therapist help us get his talking device and programmed in his Halloween messages.

Thank you Pottery Barn Kids, Charlotte, North Carolina

A phone call suggested by his big brother Ian to the Pottery Barn Kids Store in Charlotte, North Carolina found the sold out on line Snoopy Costume which someone had just returned and it was the only one left in the system. A trip to Build A Bear after a doctors appointment found his penguin side kick Furry's Pumpkin costume. Snoopy costume, check. Pumpkin costume, check. Teal bucket, check. Every morning he asked if it was Saturday. Finally the long awaited day arrived.

Mackie, Furry and Doctor Dad

Saturday 10/21/17 was Sweets in Treats in Lancaster, Wisconsin and a magical day. Every where we went, Mac has his treats. He played his social messages.

Happy Halloween

Trick or Treat

As we walked the streets we would have people stopping and saying "Hello Mac". Kids from his school would make the point and stop to "talk" with him. I wish I had releases to show the videos of him talking with his friends! Adults who work in the school or the local medical system who work with him or his Doctor Dad. Mackie is his own kind of celebrity and it warms my heart that he is not ignored like many kids in a wheelchair often are. But he is included, he is popular and included. His side kick Furry was also very popular dressed as the Great Pumpkin. But that is another story for another day...

"Hello Mac"

"Thank you for the Treats" with help from his Novachat10

Thank you Karri Schauff at Cruisin Kids and the businesses in the small town of Lancaster, Wisconsin for making the 2017 Sweet Treat Event inclusive for not only Mackie but for any child with food allergy.

Karri knew about disability due to her nieces challenges and found a barrier for Mackie and came up with a solution. Writing this brings tears to this Special Needs Mom's eyes. She provided non-candy treats for every store or business and they were ready for Mackie! The world is full of challenges and this Halloween she helped me Miracle happen for Mackie. All 38 businesses in the tiny town of Lancaster went Teal and offered alternatives to food treats this Halloween.

Thank you from a very grateful Mom and from a very exhausted Mackie!

The Great Pumpkin will have to wait for the trade in bucket until Halloween night. But Mackie is fine with that. The Pumpkin Patch is ready and waiting for that Halloween night. And by the way, according to Mackie, there is a Great Pumpkin. The reason why Sally and Linus didn't get any presents, is that they didn't go to bed. He is magic and cannot be seen just like Santa!

Happy Halloween and Mackie and his best friend Furry is ready for the Great Pumpkin and enjoying his treats in the meantime! If you happen to be in our area on Halloween night stop by and meet Mackie and we are participating in the Teal Pumpkin project and have all sorts of allergy friendly treats. Our house is marked on the Teal Pumpkin Map at 1246 Park Road in Lancaster, Wisconsin.
Stop by for Treats for Everyone and see Mackie's Pumpkin Patch!

There is still time to stop by Target, Walmart, The Dollar Tree or your local store to pick up a bag of tiny toys, stickers, bubbles, pencils, or Halloween trinkets and paint a pumpkin TEAL and help a child who has an allergy or a special need be included this Halloween. The Teal Pumpkin Project.

Monday, March 20, 2017

When we adopted our children from the foster care system, we were promised Medicaid to piggy back with our insurance to help defray the costs often not covered by insurance. For many special needs adoptions there are federal supports to help us help the children without bankrupting families.

It has been a life-line for many special needs adoptive families to be able to get the necessary supports that insurance does not provide and to fill in the gaps.

Children's mental health and therapies are often not covered well by insurance. If you are lucky enough to live in a state where mental health parity has forced insurance company's to pay better. But the out of pocket expenses and deductibles can be expensive.

For children with developmental and physical issues, insurance often denies many of the therapies, equipment, specialized formulas and other things these complex kids need and having Medicaid is a must for special needs adoptive families.

With all the talk of block granting Medicaid and letting the states decide and ration the care along with per person caps and possible loss of any protections for these vulnerable children.

I wonder what the future will hold for those who were promised Medicaid and appeals rights for our kids.

Right now, we struggle to get many of Mac's equipment funded under Medicaid already here in Wisconsin, what will happen when the budgets become even more stressed.

Mac's wheelchair was denied by Medicaid. We finally got approval late last year from insurance and we had already met his maximum out of pocket insurance criteria of $6, 500 per year. Fortunately our insurance company saw the need and funded it despite Medicaid saying it was not medically necessary.

Mac's potty seat that has allowed him to use a toilet denied by insurance and Medicaid. Mac's bath seat, denied by insurance and Medicaid. Mac's formula denied for years as a foster child and once adopted, and with help from high up was I finally able to get it funded. His Physical therapy denied. He did not need it, despite his involuntary movement disorders and being unsafe to navigate in the greater community. Has anyone seen Mac walk lately? Needed genetic testing denied by insurance and Medicaid does not cover it. I am currently waiting quotes for how much this will run us. I am told it will run anywhere from $2,000 to $5,000 out of pocket or more.

Now we need a wheelchair lift and modifications, not coverable under Medicaid, but coverable under waivers. But our local county system says he is not eligible for any waivers. We need a ramp to get Mac's chair out of the house and for it to go to the bus. But not coverable under Medicaid and only through waivers which the county says he is not eligible for. There is another $18,000 to $25,000 or more.

Medications, equipment, therapies, genetic testing that are ordered by physicians become a responsibility to the parent to provide. Parents can be put in a vulnerable position if they don't get them when both insurance and medicaid deny. Parents pay because they have to get it, or go without and risk the ramifications. Only parents get charged with medical neglect, if something happened because we didn't have the right equipment, therapy of medication. But not the Medicaid or insurances. We have appeal rights, but are those going to go away too as they were apart of the ACA or Medicaid entitlement?

He is already eligible for Medicaid and they told me I must pay for him to be covered under a waiver even though he came from the State of Wisconsin. I found rules that he is category A, and we shouldn't have to. But the county told me he is not eligible for any waivers due to his disability and they haven't screened him again and this is all in the current system.

Things are going to get more complex for special needs families. Wait lists already exist and they will get even longer. What will it mean for those with children who are Federally entitled because of their Special Needs Adoption and our promised supports of Medicaid and Adoption Subsidies?

Our president and republican congress do not like entitlements, so what will it mean for those who have taken in some of our nations most vulnerable children? We were promised an entitlement.

With insurance companies already are known to exclude many things medically fragile, developmentally delayed children, we face many uncertainties.

There are many questions that I have about how the repeal of the ACA will affect my special needs children. Will our maximum out of pocket protections go away with the repeal of the ACA? Right now our maximum out of pocket for the family is $13,500 per year. Will my adopted special needs children and adults be eligible to remain on our insurance or they charge more for his complex needs.

I am a strong component of special needs adoptions, but until we know what they are going to do with the care and supports for our special needs children under Medicaid and the changes to insurance and how the block grants are affected come down, I would thinking twice about signing on the dotted line to adopt.

I am hearing no talk about how special needs adoptions and how the child welfare entitlements and grants are being affected. But so many of the other block grants, and other programs are on the chopping block, one can only wonder.

Many families cannot afford to adopt these children without Medicaid and waivers to get these children like Mac's complex needs covered. We have a high paying job, and we find ways to pay when our promised supports have failed. But even our family is struggling to figure out how to now fund the cost of the wheelchair van modification, the wheelchair ramp and the house modifications to accommodate Mac's needs and genetic testing. We just spent $40,000 on a new van we knew we had to cover ourselves. I pay for respite, hire cleaning help because I have to watch him so very closely. The costs just keep mounting. But someday we need to save to retire.

The schools get Medicaid funding for helping under Medicaid and will those be affected? How about special needs funding and rules under IDEA be affected in the upcoming legislation?

I am not very hopeful that our government cares about our most vulnerable children. Those who used to be foster children who found families and were promised support to help them in the future. I would love to be wrong. But it is a complex system and I doubt those in government understand the complexity of special needs adoptions, child welfare, special needs education, and insurance with catastrophic needs. Few understand just how expensive and complex children from who have faced trauma, abuse, neglect or live with prenatal brain damage and genetic conditions can be. The powers that be need to think about how block granting Medicaid, repealing the ACA, and will mesh with the promised safety net for this very special population.

Anny

Postscript: The state just reduced the amount of ABA therapy that was requested. Our insurance will fund the major amount and all that would actually go through the state would be the deductible and copays so they actually save money on Mac. But kids on Medicaid in Wisconsin are being offered less than kids on insurance that is listed on the State of Wisconsin Insurance Mandate.

Friday, January 6, 2017

When we adopted our children with Special needs from the foster care system. They came with a promise of Medicaid to defray the catastrophic costs of children with special needs, mental health challenges. It has been in important life-line to help our children.

Our children were lucky to be able to be put on our private health care insurance. Before the ACA we had mental health caps of $10,000 per year for my adopted children. I paid privately for most of their care as both insurance and Medicaid would not cover it. But without the ACA will we go back to the days of limited coverage, lifetime limits and I know of parents whose kids maxed out their health insurance policies for their medically complex special needs kiddos leaving no coverage for their parents and siblings when they maxed out the $1,000,000 lifetime cap for the family. Many workers back then told families to not put them on their private insurance. Things were complex.

But with the Repeal of the ACA many questions are being asked? Will they still get coverage after 18 and even more troubling, for those who have adult disabled adopted children they are in jeopardy of being able to stay on their parents plans. What will happen to my children with preexisting conditions if I have to switch jobs? Will they be uninsurable?

What will that mean for the hundreds of thousands of families who took on children from the foster care system with an entitlement to Medicaid and its protections? What will it mean for the thousands of children currently in the foster care system who are awaiting homes? According to NACAC over 50,000 children found homes each year and with of Federal Supports of Medicaid and Adoption Assistance helping defray the complex costs of parenting these at risk and vulnerable children.

We were made a promise of Medicaid to help pay for the many therapies, services and equipment that this vulnerable population needs. Would the states could be allowed to no longer have to provide EPDST (Early Periodic Screening, Diagnostic, and Treatment) under which children enrolled in Medicaid receive both regular check-up and coverage for all medically necessary treatments necessary that they check-up finds no longer be provided and the ability to appeal denied services?

The Federal Government moved these kids into families and now they want to change our safety net? They made us a promise and they need to think about how it may affect the promises they made to tens of thousands of families who adopted some of America's neediest children.

When is the adoption and foster care communities going to wake up to the fact that our safety net is in jeopardy? For the families with private adoptions or overseas adoption what will it mean for special needs waivers as they are optional? What will it mean as they give the states only so much money to service the Medicaid Population will the entitlement that was promised us until we raised these children be honored?

We need to wake up that they are proposing to Block Grant Medicaid and that will give the states authority to decide what services, what money, what they provide this vulnerable population.

What will it mean for Mackie? He has FAS and they say it will cost over $2 million dollars in his lifetime for care and services. Will he get his wheelchair next time which they already denied even under the current system? Will he be able to get his braces or his therapy services? Will they cover his elemental formula at over $75 a day?

What will it mean for his future?

How many adoptive children who need specialized mental health services due to their traumatic and abusive histories will struggle with getting the mental health and services they need from Medicaid? Will the important waivers still be there? My Mackie's health insurance has saved the taxpayers over $60,000 to $80,000 annually in covered services and while our promised Medicaid back up denied most things and to get his formula covered I had to file and appeal for an administrative hearing.
With a block grant, we could lose the right to appeal!

The tragedy of Custody Relinquishment to get mental health services which already had been a problem of the past, is it due to repeated? Insurances still have limits on hospitalizations and ours are only 30 days. Children with severe mental health needs are still not adequately served by insurance companies in many states. Often times the child after an out of home placement of 30 days can be covered under Medicaid as a family of one, and parents income does not count. If block grants come in all bets are off as states can make their own rules and cover who they want. Will our adoptive kids with PTSD, mental health and prenatal exposure challenges have to find themselves in the justice system to get needed help as they begin to RATION federal Medicaid dollars?

We need to speak up and reach out to our legislators and ask these hard questions!

Wake up Adoption Community and learn about what Block Granting Medicaid may mean for the
safety net services and make sure they consider our kids needs during their discussions.

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The Tiny Titan

Our Miracle

Tiny Titan, Journey of Hope by Ann Yurcek

Mom's Choice Award Winning Non-Fiction

Our Story

In 1989 our youngest daughter Becca was born with a rare genetic disorder, (Noonan Syndrome) and while she struggled to survive, our family tumbled into poverty. With Six children we had to live below the poverty line to qualify for help to cover her million dollars in medical bills.

Becca never gave up and neither did we.

When my husband lost his job due to Becca's insurance issues, he returned to school. It is never too late to change careers. Two years of undergraduate coursework and four years of medical school were supported by delivering thousands newspapers and thrifty living...and prayer.

In the spirit of giving back we went on to adopt five siblings separated in foster care. Leaving our home of twenty years, two families who both knew adversity moved onto the Hope of a new life 600 miles away to begin the Journey through Residency and becoming a New Family. Along the way we soon discovered that our newest children would be diagnosed with Fetal Alcohol Spectrum Disorders and challenges from their histories of abuse and neglect. My strength would be tested, my advocacy skills honed to help my children with special needs. All the while bargain hunting and struggling to feed our family of thirteen on residency pay and prayer.

Our Tiny Titan showed us the gift of today and to never, ever give up. Our family CHOSE to not become a statistic of families facing catastrophic illness. We learned to live frugally, stretch a dollar, and find happiness with being together. I learned to navigate the complex world of advocating and finding help for my children with special needs. Instead of feeling hopeless, we found strength in turning the negatives into the positives.

My children are now all nearly grown, our family no longer financially struggles. My job is never dull, the kids keep me busy, there is always a battle or some barrier to cross to help my children. My husband is now a surgeon, my children make me proud as they live their lives. I have a new gift the enjoyment of being a grandmother.

With my book now published, the kids grown, I have a new opportunity... To write again... and share in the special needs world and take care of our newest addition to the family, McKellan Edward Yurcek was offically adopted April 16, 2013.